Plate or no plate?

[KurtPT]

I was decompressed in August with the standard craniectomy, Laminectomy and duraplasty, but no plates or meshes put in. Every day since, and sure most of you can relate, I'm reminded if the surgery when I tilt my head back even a little, try to wear a hat or hard hat or anything like that. That feeling of something pushing on my brain and the pain that comes with it had been getting to me. Does anyone have the plate, and if so, how is it with it? I'm going see the surgeon for a check up Wednesday, and I'm going to talk to him about this. Any thoughts or advice on this are welcome!

[selmaS]

  Fantastic news all the way around.....

Do keep us posted on how this med works for u.....and then update the thread topic of the month for April 2014 which is meds related.

Thanks for the update : )

[KurtPT]

Just to update on this, I saw the NS yesterday and no new surgery is needed at this point.  I described what was going on and as I was talking, he put his thumbs on two spots just at the base of where the skull stops (post-decompression edge) and pressed, which replicated exactly what I have been experiencing.  Looks like it's nerve issues at this point.  He put me on neurontin for this.  This is sounding like a much better solution at this point than surgery!!!

We also got to talking about the local ASAP support group that I helped start for this region and it looks like he will be a huge support for us.  He said that he sees a lot of people with Chiari come through so he is going to be promoting the group to them and got his nurses and receptionists together and told them to do the same! All around a day of good news!

[selmaS]

  Good Luck !!

[KurtPT]

Well, the Chiari brain strikes again. It wasn't the NS I was supposed to be seeing today but rather the NL. Luckily they are pretty much next door to each other. Rescheduled the NS for Monday and I figured I might as well as the NL about the same stuff while I'm here. We'll see what happens!

[selmaS]

Yes, but it is not a complete rotation....if u know what I mean....the odontoid was only partially retroflexed...but was causing a good part of my CSF obstruction....

I know they said I may also need a fusion bcuz of CCI, but for me the decompression was enuff....

Treatment options include a standard suboccipital craniectomy, a transoral odontoidectomy, or a combination of either or both with additional internal stabilization.

[KurtPT]

Selma-
Do you have retroflexed odontoid? in looking at my MRI compared to similar online with retrofled, it's a mirror image.  Also, do you know what is done for this?

[selmaS]

  Oh ok so ur first surgery was a conservative decompression....since u had scar tissue do have them check u for Ehlers-Danlos as it can be a reason for scar tissue to form....

It seems many that have a more conservative surgery first go round end up going in for a 2nd surgery.....

I would also advise to cut back on some activities to allow ur self to heal a little more since this is ur 2nd surgery.

[bstnana]

I was not diagnosed with any other conditions.  They did test me for a condition (sorry I don't remember the name) where the nerve endings are all affected which can be caused from the first surgery.  I think the surgeon believed I may have some of that condition because of the pain caused when they would just touch my head. he tried treating me with Gabapentin for 8 weeks to see if it would help, but I never made it that far because I was in too much pain.   During the second surgery, he found a lot of scar tissue, a growth on the cerebellum and that the first surgeon was way too conservative in the amount of bone he removed and not opening the dura.

[selmaS]

  Well I know there is no way at 5 months post op I could have been in a gym....slowly or other wise...could be u r doing too much too soon and need to step back a little.

We are all different as to how long recovery takes, and it can take up to 2 yrs for the nerves to heal, so over a period of yrs we can continue to see benefits we may not have expected a few yrs earlier....

Do u know if u have ne related conditions like Ehlers-Danlos, ICP, CCI, POTS, ???? As they can affect how u recover.

[bstnana]

I had no plate the first time and three years later during my second surgery they put one in.  It has been a little over 5 months now and was doing pretty good until the last two weeks and the headaches and neck pain are back.  I am getting worried that something is wrong, but I may be jumping the gun and need more time to heal.  Also started back at the gym slowly but have been stepping it up doing push ups, planks and sit ups.  I thought since things were going well it would be ok, but maybe not yet. The other thing is long days at the computer or a lot of loud noise seems to get to me. What have you seen as a recovery time?  

[selmaS]

  After decompression, there is less support if u have had a lamenectomy.....and could cause this to be more of an issue.....

Deff have a chat with ur Dr....and keep us posted on what u find out.

Good luck

[KurtPT]

Very interesting.  I'm definitely going to ask about the retroflexed odontoid and for the OR report.  I've always had this even before the surgery, although not nearly to this degree.  It was previously more of a dull pressure, but is much more of a hindrance now since the surgery.

[selmaS]

  Hi...I do not have a plate or screen and I am doing well without it and I know a few that had the plate and had to have it removed....

I am wondering how large an area ur Dr made that u feel it when tilting ur head back.....

The other possibility is could u have a retroflexed odontoid that u have this issue when u tilt ur head....???

Deff ask the Dr for a OR report and ask about the odontoid to see could it be an issue.

Keep in mind it takes time to heal inside from this and u could still be tender and a little swollen....

[KurtPT]

Since doing more research, I guess I should be calling it a mesh or screen!